Anne, experience of managing her diet with no pancreas

Diagnosed in 2009 with an intraductal papillary mucinous neoplasm (IPMN) and in 2010 with a malignant IPMN in the head of the pancreas

I am not a typical pancreatic cancer patient. My weight has been steady for several years and I have always had a good appetite. You wouldn't think I'd had a malignant tumour because it was removed early as a result of vigilance over my chronic pancreatitis. I had a distal pancreatectomy and splenectomy in April 2009 and a Whipple's procedure in December 2010.  So now I have no pancreas and cope with the consequences, i.e. no pancreatic enzymes and insulin-dependent diabetes.

My diet is pretty much three meals and four snacks a day. I try not to have too much fat although I do like butter and have plenty of carbohydrate. I usually have some fruit during the day.

This is a typical schedule:

7.30  a.m. Cup of tea and a rich tea biscuit.

8.30  a.m. Two slices of toast with butter and marmalade + Novorapid + Creon

11.00 a.m. Drink and a snack.

12.30 p.m. Salad or banana sandwich or soup or boiled egg or vegetable rice + Novorapid + Creon

4.00 p.m.   Cup of tea and a snack

6.00 p.m.   Evening meal.  Could be quiche or lasagne with salad, chicken and rice with roast vegetables, roast dinner, fish and mashed  potato, shepherd's pie with peas and carrots.  + Novorapid + Creon.  Any typical evening meal.  I cook for my husband and we have the same.

10.30p.m.  Two shredded wheat with milk and sugar + Novorapid + Creon       

I have a list of snacks from the diabetes nurse which don't require insulin so I tend to eat snacks from this list. They contain less than 10g carbohydrate. E.g. Satsuma, a yogurt, a piece of cheese, a few nuts, slice of melon, a packet of Wotsits.

I know from experience how much Creon I need in order to stave off steatorrhoea. I use the 10,000 unit capsules. I take five with my breakfast, two or three with each snack and five or six with my evening meal. I take one capsule at the beginning of the meal and the rest at intervals throughout the meal so the enzymes are well-mixed with the food.

In addition to that, I have to cope with the diabetes. Novorapid is taken with each meal depending on the amount of carbohydrate in the meal and the pre-meal blood glucose reading. Lantus is taken once a day at noon. With my breakfast, I take five units of Novorapid and the maximum I need with a meal is six capsules. I have a book called "Carbs and Cals" recommended by the dietician at the Royal Free. It has pictures of food on a plate and is a good indicator of how much carbohydrate there is in various meals.  I need one unit of Novorapid per ten grams of carbohydrate.

I do tend to worry about the possibility of having hypoglycaemic attacks. My blood sugar does go low quite easily but luckily I am aware of it as soon as it gets below 3.9. People with no pancreas have no glucagon to release glucose from the liver when blood sugar is low so there is a likelihood of them suffering from hard-to-control brittle diabetes. I carry my blood glucose monitor all the time as well as a supply of glucose tablets -and I do need them quite often.

I test about seven times a day, first thing in the morning and before meals. About 70% of my readings are on target the rest are high or low. I'm working with my diabetes nurse to improve this.

This has all made a difference to my life. I have to be much more organised - can't just jump in the car and go out for example:

I'll need my two insulin pens, a few needles and some glucose tablets, my monitor and mobile phone. My alarm is set to twelve o'clock to remind me to take my Lantus.

I mustn't forget to put on my identity bracelet with all the phone numbers in case I go hypo.

I must test my blood glucose before driving and correct it if necessary.

I won't be able to go till I make sure my bowels are OK!

Now I have to have about four snacks and three meals every day.

I have to monitor my blood sugar seven times a day.

I have to inject myself with insulin five or six times a day.

I have to take Creon with all my food or else I'll have terrible steatorrhoea and malnutrition.

It's all worth it, though to have said goodbye to my pancreas and to have survived a malignant tumour.

July 2011